How Do I know Its All Gone

debintn749

How Do I know Its All Gone

debintn749

I had a dx aug 24. Lumpectomy Sept 4, Mx on Sept 15th. I am worried everyday that the cancer is somewhere else. The DR told me the DCIS was contained in the ducts and the MX was 95+ curative and he rx tamoxifen but I have not taken it. How do I know its no where else. Would they suspect it? This breast cancer awareness month everytime you look anywhere there is a reminder of BC. Elizabeth Edwards now giving in to breast cancer. She was cured and now she is dying. I am consumed with this thought. Please help me know we are lucky, they got it all, no lymph nodes no chemo bi radiation, but I am wondering how many days, how many seasons are left for me. I can be ok for awhile and then it hits me. YOU HAVE <HAD> CANCER- and Im sick to my stomach.  How do I go forward. I know there are those of you who are years past dx and I need to hear how you all did it.... Thanks

FlowerArtist

Hi debintn.  I had the same problem a year ago (9/23 was the date I found out ... 10/23 they said it was out and the margins were clear).  I've been lumped out and radiated up.  Not going near tamox.  I was in the same place you are for a while and after a while it seems to go away.  Never completely away, but away far enough to get back to life.  I really think the bottom line is we will never know if we are completely over it .... but that same thought actually hangs over everybody ...not just us who have had it, but EVERYBODY.  Cancer does as cancer does.

Yeah, really a drag being reminded all the time about it ....I hated last October.  Its implied that if you get your mammos, you'll be protected, which you are because it can be cured if it is caught early.  Yes, you did the right thing, you got your mammo.  and you really were lucky .... just like me.  They found the problem really early and they took it out and its over.  It may be over forever ... I pray it is for both of us.  It probably is over forever.  (Have you said "how can I be lucky, I've got cancer .... if I was lucky it never would have happened?  I sure did.)

But here is my take.  I REFUSE to let this damn cancer take over the rest of my life.  Yeah, I'll always know that I've had it and I'll always know that I have a better chance of getting it again than my friends that haven't had it.  But I don't have it now and I'm going to be the healthiest and happiest person I can be until I finally someday die of something.  (Hopefully really, really fast and I won't know its coming .... wouldn't that be nice?)

I think its just like most things in life....when something bad happens, oh, god, does it hurt but a few months later it doesn't hurt so bad and eventually its just a part of you.  Remember the first time you fell in love?  And remember that first break-up?  And weren't you ready to DIE?  And now do you even remember the person?  Same thing.

Don't know if this helped, but for me the way I did it was taking it one day at a time.  And, yeah, there were bad days .... breaking down in tears in restaurants or whatever it takes.  Just live through it.  It will get better, I promise.  Do whatever you need to do to get through, but never believe you did anything to make it happen to you.  You didn't. 

(Those words were the words that my friend Candace gave me when I first found out.  Candace had a very, very invasive case of breast cancer and she had a god-awful first year....I know, I was there.....and now she is a 13 year surviver and traveling the world with her husband.)

Take a Xanax, get a massage, eat chocolate ..... love yourself and all of the people in your life.

You have my love and hugs and all the blessing I can send to you.  Take really, really good care of yourself .... not just physically but everyway you can.

Love, Suzanne

alekatsr4u

Hi Debintn749,,,,RELAX please....DCIS if it was 0 stage, it is in situ in the ducts and does not show up anywhere else after the lumpectomy........Take your tamoxifen, better yet, Arimidex,,,my doctor told me Arimidex is safer interms of side affect...only for 5 yrs intake to prevent recurrence....Edwards probably had a different DCIS in the higher numbered stage and was aggresive,,,,but when diagnosed probably wasn't state of the art when claimed cured....when you are DCIS 0 stage, contained, they dont do lymph nodes,,,but I had radiation treatment afterward for safety....ask your doctor why no radiation afterwards? My hemotologist was and is still good for me...he is like a teacher and explained on blackboard exactly in drawings, what I had and the comparasion to invasive, etc.....why not go back to your hemotologist and ask him to educate you more on exactly what you had......also I was able to look under the microscope and saw the tissue biopsized...that was neat....you can compare with internet slides how the cells are clumped for DCIS etc etc....ask your doctor....I am for one who is completely thorough scientifically, so I can rest my mind....do it and I think it will help you, sleep and not be sick to your stomach!!!

annie7216

We all feel this way, but I, like Suzanne, am hopeful that these feelings will eventually fade. Getting these TEs out will help as they are an uncomfortable reminder every day. I don't believe Elizabeth Edwards had DCIS; I believe she had an invasive cancer, which has a higher liklihood of returning than dcis. DCIS also does not come back mestatic...it must first have an invasive component before it can spread. With a mastectomy, we would know if it became invasive as it would appear as a tiny lump. Actually most studies put the cure rate and reoocurance rate at better odds than what you state. I've read 1% reoccurance rate and 0% mortality rate with mastectomy. Also remember that your odds of getting breat cancer are less than a woman in the general population as she has about an 11% rate if she is in her 40s. Hope you feel better soon.

debintn749

You guys are truely a blessing. When I talk to friends or even my husband about how I fell at certain times, they say " you are fine" " dont worry" " cancer is gone" etc, but sometimes I wonder if in the back of their mind they are going to say positive things to a cancer person. I know Im being paranoid. I am waiting to get my recon scheduled. I did have extensive dcis and I did have a right mastectomy, but Im not wanting to take the tamoxifen. It clearly said in the insert with the medicine  " if you had or have dcis please talk to your doctor about the risks out weighing the benefits and I would worry that this would cause more trouble as every ache and pain now is "cancer???".  Trying to live, but stigma hurts. Watched my mom die from this, but she didnt get treatment til it was too late and that was 24 years ago. Im now 43. I am so thankful for your help. Ikm an only child, no children, no family cept me and hubby who is legally blind, I worry about what would happen to him if something happen to me. I am the only worked only driver, so its complicated. I had 10cm dcis luckily I had a breast that could handle it-lol ER/PR+, no nodes, well they didnt check so Im assuming they are clear. No rads, or chemo due to mastectomy. But I want to move on. Im so gllad Ive got someone who understands, and when are we considered a "survivor? i just want this feeling to let me get on with my days and Im hoping , as you say it gets better with time. I love you all and I dont even know you, but we do have a sisterhood of sorts. We all heard the diagnosis, went thru the biopsies and had to decide the treatment and now reconst- for a foob-lol Who da thunk it......Thanks

CAROLMARIE427

I have and still slightly in that place you are.  Had a mastectomy for DCIS in September 2008 and a preventative mastectomy in July 2009.  Like you, although I tested BRCA negative, my mom died from the disease and so did one of my aunts.  I watched my mother suffer from this horrible cancer.  However, she was far more advanced and treatments were limited 20 years ago.  I think because we saw our moms die from this, it puts in our heads that we are going to have the same path like they did.  It is very hard to overcome this.  My doctor told me that my odds of having breast cancer again are like 1% but of course we all worry that we will be in that percentage.  I think with time it does get better.  We all, whether we have had breast cancer or not, do not know what tomorrow brings.  Do not fear each living moment because then you will look back and have spent your days worrying.  I know it is really hard.  But we are not our moms.  We caught our cancer at an early stage and we are being treated in a time that is so different than it was back when they were diagnosed.  Put one foot in front of the other slowly.  You will get there.  Hugs    

debintn749

carolmarie- WHy the 2nd mastectomy? If you dont mind me asking? I tried to get my surgeon to take them both, but he didnt want to remove both. Did you take the tamoxifen? I believe you are right about the worrying. You have double mx and you still worry? Do you think of it less frequently? Did you opt for recon? Sorry so many questions. This all happened so fast, sometimes it seemd like a dream and now Im questioning everything, cus you go thru all this in sort of a  robotic state. They tell you go here , do this, and you do it. Im a semi pro dart thrower.  Three days after my mastectomy, I went t o play in a tournament, to feel normal. I had to go on the news to fight the treatment I was getting with my insurance to force them to take action, so alot of paople found out I had cancer thru media, it was hard but I had to do it. They were trying to get around paying for it by filing my hospital stay as a 23 hour observation instead of hospitalization, sort of a drive thru mast. to avoid paying for recon. Its been hard. But battling this kept me busy, now the paranoid feelings that Im damaged, people think Im dying etc. People bring me gift of food and such, and it makes me cry, cus I think, they think, im dying. Hard to explain. People say you look the same etc, Im thinking, How am I supposed to look. Crazy stuff like that. Thanks for all the support. It really helps me feel better, its magical cus I cant get this kind of comfort from anyone else. ((((((((hugs)))))))

koshka1

Hi Ladies,

Just to clear things up....Elizabeth Edwards did not have DCIS...she had infact Invasive Breast Cancer which is different - IDC.  This can spread thru the lymph nodes and blood stream.

DCIS is cancer that is "still" in the ducts and has not spread...a completely different story.

I hope this helps!

Hugs...Kosh

Jean09

Hi Ladies,

Referencing Elizabeth Edwards, does anyone know her initial diagnosis (stage, grade, # of nodes, er pr her2 stats)? Also what year of original diagnosis and her initial treatment (chemo, rads, hormone therapy, mastectomy.....)??

unklezwifeonty

Deb,

ER/PR+ DCIS has excellent prognosis when treated per NCCN guidelines with Mx, Tamoxifen and/or chemo (if needed). No 1 can give you a guarantee though. 

debintn749

Elizabeth Edwards had stage 2 invasive cancer and was treated with lumpectomy w rads and them monthly chemo, but now 4 years later she has mets to the bones. It is very sad. Linda McCartney same thing had a lump, had it removed , chemo reds, etc was "curative" then it came back and got her.  Can you please give me your opinion on taking the tamoxifen for DCIS? I think its more trouble than I need. With diligent monitoring on the remaining breast, i hope to catch something if it everr happens. Thanks

CAROLMARIE427

Hi Deb.  I had a single mastectomy when I was diagnosed with DCIS.  I was originally going for a lumpectomy but I had DCIS in two places.  At first I was going to do the double then, bur truefully my head was all over the place.  I had to come to grips first with having cancer to begin with.  After many long talks with my surgeon, I decided to just remove the one breast that was affected.  I just felt that maybe I was rushing into something if I did the double that I would later regret.  I did do reconstruction with tissue expanders right away.  I had many healing issues because I kept my nipple and it turned necrotic, but got past that and I am ok now.  After six months I had to go for testing on my other breast.  I didn't start Tamoxifen because I was still contemplating doing the other side.  I somehow knew in my head that I couldn't deal with the frequent testing, although my doctor reassured me that I would be closely monitored.  That first mammo after my surgery through me into a tizzy.  Everything was fine, but I was so deathly sick to my stomach about the entire procedure.  I decided then and there that at 45 years old I couldn't go through this for the rest of my life.  Also, as I mentioned I have a strong family history with my mom and aunts having breast cancer.  I had the other side done in July 2009.  Do I regret not doing both at once?  Well, I have to admit it would have been easier to have one surgery and be done with it.  But I had so many healing issues with reconstruction on both sides that it probably was better off the way I had it done.  I know that I completely thought about it too and didn't rush into any decisions.  I am not on tamoxifen because I did both sides.  Otherwise I would have been.  I think I would have taken the tamoxifen and see if it brought me any problems before rejecting it, if I had kept my healthy breast.  Everyone has their own story.  Some women are completely fine with testing.  Many women think it is not necessary to take away a healthy breast.  I just couldn't feel at peace.  I still am not 100 percent at peace.  I still worry that it may someday come back.  It is a very personal decision.  The choice I made is not for everyone.  It has to be thought out and weighed and only you can know in your heart what is right for you.  You will be fine.  Each day gets a bit better.  Private message me if you want.  Hugs    

debintn749

Thanks carolmarie. I would like to know where all the long term DCIS survivors are? I need to know there is a lot of hope out there for me. I mean tonight i was driving home and all of a sudden it hit me again.... this crap is gonna come back and kill me. Felt like ice all over, ya know like you just saw the boogie man. Really screws me up. I know it could be alot worse, but in my mind I feel its just a matter of time. I HATE that.  There are so many of us. The one post on here that said that now that I have had it and had the mx, chances are less of getting it than a woman who never had it. Ya think thats true? I sure hope so. Thanks

CAROLMARIE427

Hi Deb.  I think that the longterm DCIS survivors have moved on and beyond these boards.  It is my guess ( and hope)  that most of them are out living a nice healthy life.  Yes, I do think that if it was indeed pure DCIS that the chances of it coming again are very slim.  At least that is what my doctor told me.  I know on my prophylactic side he said something like 1 in 500.  That seems better to me than the 1 in 8 that you hear that breast cancer strikes. I would assume that if the DCIS is contained and you have had a mastectomy that it knocks the odds of you getting breast cancer again too in that breast unless an invasive component was missed somehow.    We can throw out the statistics all we want, but no one knows what tomorrow may bring.  I am still in that phase too that it can and may come back one day.  But then I try to tell myself that any woman has to face the fear of breast cancer whether they have had it or not, and they don't even know what tomorrow may bring. Unfortunately, there are so many of us.  Just try to take one step at a time.  You are still only a month or two out of surgery.  It is normal to have the fear because let's face it, one minute we are fine and the next breast cancer is staring us in the face.  We realize we are not invincible.  If you really cannot cope maybe you can find a breast cancer support group for women with DCIS in your local hospital.  Maybe when you see long time survivors there you will feel better.  Try to live each day.  I know it is difficult but we all must try to think positive.  

debintn749

Thanks CarolMarie. Well assuming my path report was accurate, it was pure DCIS w no invasive component. Grade 3. 10cm. All gone. You are right, I am still very early after surgery. I am now looking toward reconstruction, sort of. I dont want to deal with stuffing my bra, but Im about over the surgery. So- I have the tamox. Have not taken it. Trying not to think like I do about dying etc. But looking on here sometimes helps, and sometimes scares the holy hell out of me. I know I am lucky, they told me after the biopsy, it was the best I could hope for... so Ill just have to deal cus I really dont have a choice. I just dont want it to come and get me likeit does in my sleep.

FlowerArtist

Hi debintn, Suzanne here again.  I had pure DCIS .... really small (.5 cm) .... it was removed a year ago.  I did radiation and now I'm getting back to life.  Gotta admit, I wasn't fully over the psychological part until I got the good news on my first post BC mamogram.  I suspect that I'll have reoccurrances of the scary thoughts off and on over the next few years, but I've assuming that its gone and that it probably won't come back.  Yes, we all hear that wonderful 1 in 8 statement but you gotta know that 1 in 8 women do NOT die from BC.  Otherwise, there wouldn't be many of us around.  There are probably a lot of women that you know that have had it and recovered and you never knew. 

Most of my friends don't know that I had it. (I even kept bowling right through radiation -- I had the treatments at 9:30 and bowled at 10:30.)  I only told my closest friends because I didn't want people to think of me as "my friend that had breast cancer".   I'm beginning to rethink that now because of these boards .... its probably good for those of us that have gone through this thing to come out of the closet (leaving the monsters inside, of course) and tell everybody that we CAN survive and that we HAVE survived.

There is a book called the Power of Losing Control.  Its all about the way life comes around and hits you in the face and you really can't do anything to control it.  The author's wife had BC .... he doesn't go into that at all except for one example about where she feel apart.  That was when they put the tatoo on her for the radiation.l  I, oddly enough, feel apart when they tatooed me and then couldn't tell me what time I'd be coming in for my treatments.  I read that passage the evening after a pretty complete breakdown.  (You know, crying in the doctor's office, crying in a restaurant at lunch with your friends and then crying, again, at dinner with your husband.)  But reading that passage, that somebody else feel apart at the same place I did and that a couple of years later she married was an awakening and the beginning of my psychological healing. 

Relax, you'll be fine.  Yes, its easy for me to say since I'm past the worst ..... but you will be fine. I've been there.  Your cancer was non-invasive .... it didn't get out and have a chance to run around your body doing all kinds of nasty things.  You found it early, you got it out, now you have to get it out of your mind so you can be yourself -- the you that you like -- you might even end up being a better you full of more compassion than you had going before BC. (One thing I told myself is that I actually was in a better position because I'll be monitored more closely than other women so if it should come back, we'll catch it and make it go away.  Now, I don't need that thought because I believe that its really gone forever.)  Take care. Hugs and Love.  Suzanne

debintn749

Suzanne-you are a blessing. I came to work today and logged in to read your post. Thank You. I came out and told everyone because I am on only child with no close relatives and I needed to build a support group. It helped alot. People bringing me food and things after really depressed me, because I looked at it like a pre-wake.lm crazy I know. I was very grateful. I watched my mother die of this, but she get it get advanced. I hope they know for sure it didnt get out, they didnt check the nodes. Im glad ur here. Hoping ur right and it will get better. Hope you all will be here for me as I will be for you and the neewbies to come. Thanks again Suzanne

FlowerArtist

Thank you, Deb. You are certainly welcome to anything I can do or say that makes this easier for you. I KNOW its not easy, but it does get easier.  Those of us without close family have to become a family for each other and that's just what we are doing on these boards.  I'll be checking back and I'll be here for you and you better be here for me 'cause we need all the love and support we can get.  I don't know how the private message thing works, I assume that it forwards messages on to our outside world e-mails ... if not, it must hold them for us to pick up.  We can try it out and see how it works so we can contact each other when we really need support.  I'll try to put one in for you.  It will have my e-mail so you can reach out for support directly and not have to wait on my logging on to the forum.  Take care.  Hugs and Love. Suzanne

vtmom

I once heard a zen master speak who said..."Every day you die, every day you are reborn. Yesterday is a locked door, and tomorrow is a dream. All you really have is the here and now. So you should focus on 'Moment to moment - totally satisfied.'

Whenever I start to freak out over this whole cancer thing... I try and bring myself back to the moment and stay away from the fear of the unknown. It's not always easy, but when I do 'get there', I always feel better.

Wishing you all peace of mind in all your moments.

debintn749

Im glad to know Im not the only one who freaks from time to time. This is still relatively new and fresh. Now worried every pain or ache is some other kind of cancer. But im hangin in there with all your help. I still have to do the recon thing. Not thrilled about it, but i  need it.  Going back to BS nxt monday. I havent taken the tamx. Wonder how he will take the news, if I tell him-lol